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sensitivity

sound sensitivity

flu - like body aches

severe night sweats

immune deficiency

low grade fever or chills

sore throat

joint aches

mental confusion or brain fog'

emotional imbalance

headache

and severe sensitivity to cold

Now, to tell someone who feels this sick that it's all in their head or you don't "beleive in"

their illness, or to imply that their faking, or to say that their lazy is unbeleivably cruel ,

and yet this is very often the response of people who claim to care the most!

The ilness just isn't that well understood,even by doctors who , incidently, often won't

even run the test for Epstein Barr because even if you test positve for it there is nothing

they can do.

I suppose from the medical point of veiw testing for something you can't fix feels like a

waste of time, however the terror that one has in the time before they have a diagnosis

is indescribable! As I mentioned before many of the symptoms mirror Aids and related

illnesses, and the mind tends to rest on worst case scenarios when it is unsure.And

lord knows you feel like your dying!

On top of all of this there is the attitudes of freinds and family to contend with,and this

can be the most bitter pill of all to swallow: Even people you love can be part of the

problem and you may have to re evaluate some of your relationships (Barf bags on

stand-by!)

People it seems have no trouble telling you what a lazy loser they think you are .just

ask any one suffering from C.F.S.

Quite frankly the name "Chronic Fatigue Syndrome" may have something to do with

this. Tell someone you have "Chronic Fatigue Syndrome and 9 times out of 10 they will

respond by saying " Oh, yeah well I have a busy life, I'm tired all the time too! It must be

nice to be able to sleep all the time!" And just like that you're dismissed and there is no

point saying anything else about it !

What if they called it " Complete energetic collapse"? or better yet "Chronic hangover -

flu syndrome"? At least then they'd have to relate to more than just fatigue.

Often my own strategy was to use the initials "C.F.S." ( Initials get respect, they imply a

complicated disease to difficult to pronounce) and when they asked "what's C.F.S.?" I'd

say "It's a dibiitating long term illness that can last for decades and causes:..." and then

list off several symptoms.

This was not so much to illicit sympathy as it was to way - lay what to me felt like

emotional abuse:

This attitude that I should just be able to snap out of it and get my act together,

that I was

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